*sob*
What a lovely post Zoe!
I think you were writing about Hugh (except his hair is dark). I sometimes think how lucky he is not to realise,like Sam. He is happy and content and that’s all that matters. I love all your photos of Sam. he does this lovely stretchy yawn thing like Hugh. And the cuddles … oh I could cuddle him all day. I think I get just as much from it as he does – if not more. He is so soft and squidgy and they have such a calming effect on you. I’d like to try some Sam cuddles too if that’s OK. We can meet and swap cuddles and the boys can compare eyelashes and soft hair.

Thanks Em. It might sound funny but I do take great pleasure in watching people meet Samuel, their reactions as they look at how gorgeous he is and when they notice his eyes and eyelashes. It makes me smile when people tell me how good he is to cuddle, how theraputic his cuddles are. I really enjoying sharing the Samuel Love! x

A friend of mine has a son, I don’t know what his condition is, but really, having read your last couple of articles, you could be talking about him. He’s now 20 years old and has brought his parents much joy.

oh, zoe, that’s beautiful!
you want us to see the joy that he brings and i would love to give him a cuddle too! i would also love to see the joy he brings you, to see the expression of love on your face. but i don’t need to experience it in reality because your writing echoes your feelings and tells me so much about samuel xxx

Thanks, that’s very kiind of you to say. I love telling people about Samuel and if they can’t meet him I want to tell them all about him so they can understand just how wonderful he is. Thanks for reading. x

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it